In work partly supported by an Engagement Award from the Patient-Centered Outcomes Research Institute, six speech-language pathologists (SLP) with an interest in understanding aphasia recovery processes collaborated with a Ph.D. stroke survivor with aphasia to investigate how close attention to the post-stroke biographical narratives of persons with aphasia (PWA) – as well as of investigative team members themselves – can yield insights, perspectives, and understanding that improve the functioning of multi-stakeholder groups engaging in patient-centered outcomes research. This article provides a valuable illustration of how SLPs and PWAs can work collaboratively to extend research into areas where methodological precedents are largely absent. The seven individuals who authored this article drew on a shared commitment – specifically to the value of interpersonal narrative exchanges and engagement – to coalesce as a team, broadly determine research goals and approaches, and produce initial concrete examples of the application of their methods.
Three different types of biographical narratives played a role in this team’s activities. First, there are the individual biographies of researchers themselves: these provide valuable insight into members’ backgrounds, identities, motivations, accomplishments, and values that can help shape the organization and activities of a research group generally. Second, there are written biographical accounts of PWAs, which highlight the lived experiences of those who produced them and provide the raw data from which may be drawn broad themes and particular useful insights that are specifically sought by the researcher in those writings. And finally, there are personal stories and individual experiences of the research team members that contribute to honing the focus research. This group agreed upon a focus of searching for illuminating insights –gems of wisdom, in their words – in the written biographies of PWAs, and accordingly investigators selected Team Gem as the group’s working name.
This Team has designated the written in-hospital accounts of 259 PWA as comprising the raw data set for their collaborative research, with the intended goal of mining gems of practical wisdom from these documents. The focus on acute-care service delivery experiences of PWA illustrates how – specifically – stories of individual researchers’ in-hospital experiences can help hone a focus temporally and institutionally. The ultimate goal is to use findings from this research to initiate broader discussions with transdisciplinary health care providers to advance informed, proactive person-centered health care for PWA.
For further reading: G.S. Olness, J. J. Kurnal, F. S. Stillman, et al. (2023). The narrative-based evolution of a stakeholder-engaged research team. Topics in Language Disorders, 43(3): 190-209. https://doi.org/10.1097/TLD.0000000000000318